FTD

I am so saddened to tell everyone that the world lost a great man, my husband, Richard Bay, on January 8, 2016. His horrendous battle with Behavioral Variant Frontotemporal Degeneration (bvFTD) is finally over. He is out of pain and for that we are all grateful. Rich battled this beast for eight …

Rich wrote this a couple of days ago. He rides an emotional roller coaster all day long. It is often tortuous for him. It is really hard to watch and I often feel helpless to stop his pain. As I have said before, "FTD (Frontotemporal Degeneration) is NOT a floral delivery." This is what Rich …

Rich and bv FTD (Behavioral Variant Frontotemporal Degeneration)
Hi Everyone,
I know I have needed to do some more posts in my blog. I'm sorry, but FTD has become a huge issue of time, exhaustion and uncertainty. I made this video because something really cool happened:
I got into my car and my …

My Papa and FTD
My granddaughter, Allison (age 7), loves to write stories. Click on the title above to read the story she wrote about Rich, my husband and her Papa, who struggles with Frontotemporal Degeneration. …

Rich shares a common diagnosis with the man in the linked article below, Howard Glick. They have become friends. Howard's attitude and resilience have already begun to help Rich take a new look at his own disease, Frontotemporal Degeneration.
It is difficult for patients with FTD, and their …

Last night Rich played music with some friends. Bob and John have been asking him to come over for their jam sessions for the past year or so. Rich is a drummer and sometimes the rhythms speak to his brain and calm him. Sometimes he feels a massive sense of sensory overload and cannot drum. Often …

Many people have been asking me why I haven't posted anything on the blog in awhile. I've been giving that some thought and decided it is because I am working hard at accepting the "new normal."
The irony of the "new normal" is that it is way beyond the stresses of the average family. When a …

We Can't Do This Forever
(Click on the above song title to take you to Amazon to purchase the song.)
Our daughter Tara, has produced her original song, "We Can't Do This Forever." My husband, Tara's dad, is the drummer for the production and that means so much to all of us. The song is amazing and …

I thought if all I can offer right now is a perspective to help my friends and family know how good their life is, maybe that will help someone let go of some of the little things. Families dealing with brain diseases, and any chronic illness, still have to deal with the "normal bad things"... …